In February 2011 I started this blog with the post, “In Which I Try Blogging Again.” My son was 6 months old, now he’s 6 1/2 years old. My daughter is now almost 8 1/2. Time is so strange. I was once told that the days are long but the years fly by and it has been true.
I’ve changed as a parent, as a professional, and as a person. Positive things have come from the connections I’ve made as a result of blogging and other things I’d have rather done without. Still, all were choices I made with the information available to me at the time, which is all any of us can ask of ourselves in the balance.
The culmination of so much that I care about came about with a simple job posting for an elder and disability rights advocacy position with the State. I called it my dream job because it was. Spoiler alert: I got it! And I love it! My husband first alerted me to the posting and was with me 100% even though it would mean relocating our family far away.
In conjunction with big changes in our lives, I’ve had to admit how thin I’ve stretched my attention and resources up until now.
I want to share that I’ve stepped down from the Allergy Law Project with the full support of Laurel and Mary. I’ve been transitioning my firm and cases away with amazing support from my colleagues and clients. And it is time to say goodbye to being a “food allergy blogger.” Thank you, as always, for reading.
The candles are off the cake, slices served to eager children. A little girl has her fork by her mouth, a small bite of cake hovering and awaiting a response. She was dropped off to the party, so there’s no one in particular for her to ask, so her tentative voice asks no one in particular. . .
“Does this have tree nuts?”
I ask her if she’s allergic, she says she is. I ask her if she has her EpiPen and she pauses and then reveals she does not. She really wants the cake. She seems to regret asking the question.
I can’t get it out of my mind, what would I want another mom to tell my child? How can I frame this in a way that doesn’t come off as judgmental because I am not in that other family’s shoes and I don’t know what advice they follow to manage allergies? As I contemplate the situation a few things converge – food allergy awareness week, whether I’m quick to discount lay advice online, and community generated parenting advice.
First, we’re almost upon “Food Allergy Awareness Week” – I will actually be away from my own family for a few days to present at a conference in Orlando as a one-third representative of the Allergy Law Project (“ALP”). I was invited because of ALP and will be reimbursed for my air travel and will have a room provided (see, there’s my disclosures at work). That has me contemplating audience – who are we trying to reach in an awareness context – could it be diagnosed individuals as much as people who may not know about allergies except for seasonal ones?
Second, a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice. She cautioned me that in law, medicine, and the like, we can’t discount the power of community information shared by informed individuals who have lived a given scenario.
Third, I’ve been reading the book “Parent Hacks” by Asha Dornfest – I pre-ordered a copy of my own but also received a review copy and Asha’s site and book have elements of empowerment and community based information that had me thinking about the tips, recipes, and more that food allergy parents share on social media and elsewhere. (I reviewed the book on Amazon, so you can see my specific thoughts there via this affiliate link.)
Does anyone recall the part in Donald in Mathamagic Land where Donald Duck is advised to tidy his mind? I’ve viewed my mind that way often – jumping to and fro – so blogging is often a way to achieve some organization.
Unrelated aside, well, aside, these things connect for me but they probably appear hodge podge to anyone else. I promise I’m going somewhere with this.
A few things I know, in relation to the thoughts above:
Communities have power, especially through the internet, to share useful and even life saving information.
There are awareness battles to fight within a community as well as without.
Bringing together 1 & 2 is a matter of safe spaces, supporting one another, and cogent discourse.
When there was nowhere else for me to go, there were blogs and other forms of social media. Perhaps my law license gives me a little more ability to dig deeper into what I read, but I absolutely am sure the first place I heard about 504 plans was on a food allergy mom blog. The first book about food allergy I read was Robyn O’Brien’s The Unhealthy Truth from our local library. Who am I to discount parent based medium when it helped me so directly? Well, there’s a balance, much like when I rambled on about FTC dot com disclosures. Common sense comes into play with any information you read about online, in the news, or elsewhere – but the scaffolding we each build upon is different.
I was at a self help center “ask a lawyer” meeting and the prospective client had some bad experiences with attorneys. She wanted my advice as an attorney but not representation by anyone because of her bad experiences. I can’t fault her. The same would go for a person who had a bad experience with an allergist or professional who was not an adequate shepherd of their trust. Which all goes to say that I don’t fault people for looking elsewhere when they may have reason to believe they aren’t getting the truth from a segment of professionals. But we can’t move from one extreme to another. I wouldn’t presume to say a food was “safe” for another child, I can only know what works for our family – and yet you’ll find people posting online “we have x, y, and z allergies – is food abc okay?” and relying on the responses. Is the asker or the answerer more at fault in that scenario (if any fault were to be placed)?
We have a responsibility to share accurate information about food allergies because we live it every day, but with the appropriate caveats we can share as well as protect one another. For example, let someone know the limits of advice (“this worked for us, your mileage may vary” versus “this is how it is done”). Community message boards, forums, and even facebook can all be very effective awareness and advocacy tools but we should disclaim and warn wherever appropriate. I do see this form of appropriate disclosure quite a bit, but there are some situations where people become defensive and hostile if asked to clarify their experience or acknowledge the limits of their advice.
This leads me to thinking of my presentations next week at the FARE Food Allergy Conference in Orlando. Mary and Laurel both have conflicts and can’t attend so it was up to me to carry the Allergy Law Project banner, so to speak, and take this great chance to reach others within our allergy community to share our resources and mission. I know, however, that these are well informed individuals at different stages in their out advocacy journey and I would not presume to imply that their personal experiences are diminished in the face of the letter of the law. On the flip side, I do think I want to address how to recognize when one is maybe out of their depth and needs more resources.
Just as physicians bemoan the snake oil salesmen of the world, lawyers do get frustrated at the harm that can be done when someone gets bad advice. That said, bad advice can come from lawyers just as it comes from lay people, but professionally there are remedies for people harmed by bad advice from a lawyer. You have reason to believe a higher expertise is at play, after all. The next layer of complication though comes from giving a presentation as a lawyer, or writing an article, and the recipient changing the message or making it their own. If I talk about 504 plans or rights under the ADA, I do want people to feel empowered to advocate for themselves. I really do. But I wouldn’t ideally want them to claim some authority if they share that information with another person.
Back to the little girl at the party, a lot of this comes down to trust. Who we trust and how. Whether trust is enough – we can trust that we won’t get in an accident or we can also wear a seatbelt. We can trust that a label is accurate or we can also carry epinephrine. We can trust that a school administrator is on the side of our child’s safety or we can advocate for a 504 to supplement what are hopefully already sound school policies. What we should avoid is implying that something is a safeguard when it is just a shared experience -the audience doesn’t always have the ability to tell the difference so it is up to the speaker to relay that to the listener proactively. That is simply being a responsible person.
At the outset of any business relationship, I tell clients, there’s a point where everything is going to be great – you and your business partner get along great, you trust each other, it is simply going to be awesome. And then down the line people change and circumstances change. At that point there’s an appreciation for the operating agreement that seemed so specific and pessimistic. If you’re the one to point out to a fellow allergy parent, for example, that maybe they shouldn’t send their kid to a birthday alone and without epinephrine, you have a situation ripe for conflict. Allergy Awareness Week is a time and a chance to share information and perhaps reach people within the community who have received poor advice or who are relying on sources who are not responsible about the effect of the information they provide. People should absolutely have access to resources to represent themselves, they just shouldn’t be effectively representing someone else outside of their own sphere.
While I’m in Orlando, by happenstance, Asha from Parent Hacks will be stopping on her book tour and I really hope I can make time to go meet her because her community based website has been such an inspiration to me as a blogger. She always keeps her own voice, even if something is sponsored, because she discloses whenever a concern could be raised and is not afraid to spark discussion. I remember when she wrote about the pressure parents can feel about Valentine’s Day. She suggested that we remember what our children feel about what may simply be a Hallmark holiday. But she made no apologies for not being a fan of the day when her kids were small. She didn’t claim that her approach was better or worse, she just offered her personal insight. That is the power of blogging and community based information. Putting something out into the world without judgment but so that someone else maybe sees their own struggle put into another’s words.
I hadn’t really looked through the Parent Hacks book when my ordered copy arrived because because I’d been in the middle of some health issues at the time and everything about life and the universe pretty much managed to put me in tears. And then I saw this…
And I teared up anyway. There’s something amazing about feeling like you are friends with someone you’ve never met in person and then somehow having your life weave into theirs in something so concrete as a book you can hold in your hands. A book that is about bringing a parenting community together with tips, tricks, and “hacks” to make taking care of kids a little easier.
There’s this larger parent community with islands of compassion and support like ParentHacks.com and I think there are those islands similarly in the food allergy world in the form of in person support groups, conferences, meetings, KFA, FARE, social media groups, and more. The tone we set is important and the information we give is as well.
Like Asha, my gratitude is this community’s. I can’t wait to meet some of you next week and share my hopes for continued legal safeguards, labeling, and the strong food allergy community at large. Hopefully I’ll figure out what to do about the little girl from the party in the process – I need advice on that front for certain. Thank you to FARE for this upcoming opportunity and for embracing the independence that is at the heart of the Allergy Law Project‘s mission.
I know, another post about sesame! I have some research still pending about the epinephrine expense issues I’ve written about here previously but with an influx of new cases and adding a partner at the firm (to find out more about them, check out our redesigned website!) and putting in time with Mary and Laurel at the Allergy Law Project, I haven’t been able to get much else done.
At any rate, I reached out recently to the Senators here in Nevada, Harry Reid and Dean Heller, via their respective website contact forms to let them know how important sesame labeling is to our family. Of course, there is no pending legislation, but as you can see from my last post, there are ways that the legislative branch can voice support on an issue even if it isn’t technically before them for debate or decision.
If you’re reaching out to influencers regarding sesame labeling feel free to use some of these talking points:
While some allergens have to be disclosed, a major allergen does not have to be: sesame
Sesame can disguise itself as “natural flavoring” or “spices” on labels and put people very much at risk
Sesame can also be called “tahini” or “gingelly” on labels if it appears at all
Those with sesame allergy who are exposed can experience potentially fatal anaphylaxis
Robert Wood, director of pediatric allergy and immunology at Johns Hopkins University School of Medicine notes sesame allergies are “now clearly one of the six or seven most common food allergies in the US”
The mandatory labeling for food allergens looks at the “top 8” in the US, so if FALCPA was being written today, sesame would almost certainly be included in mandatory labeling
FDA-2014-P-2035 filed by CSPI and including prominent allergists and concerned families asks that the FDA require labeling of sesame using regulatory powers under 21 USC (s) 343(x)
Ms. Homa Woodrum 3470 E. Russell Rd Ste 212A Las Vegas, NV 89120-2201
Dear Ms. Woodrum:
Thank you for contacting me to share your support for labeling sesame in food products. I appreciate your thoughts on this issue and welcome the opportunity to respond.
As you know, nearly 500,000 Americans are estimated to be allergic to sesame seeds. There are currently no federal laws or regulations mandating the label of sesame in food products, and I understand your desire to see this ingredient labeled on food packaging.
Generally, I am supportive of measures that help provide consumers with more information so they can make better choices for their own lives. Although no legislation has been introduced regarding mandatory sesame labeling, rest assured I will keep your support for this measure in mind should related legislation come before the Senate for debate or a vote.
Again, thank you for contacting me. Please continue keeping me informed of issues that matter to you.
DEAN HELLER U.S. Senator
I have a call this week with representatives at AAFA/KFA to hopefully get a statement from them regarding this issue – the support of the food allergy community is so crucial. We can’t let CSPI go it alone!
I just received the following via CSPI – we met with Senator Murphy and staff from Senator Blumenthal’s office and Senator Markey’s office in May when I was in Washington, D.C.! Since then, I’ve been on the lookout for problematic labels so I will share one of my finds here before pasting the release I received via CSPI.
WASHINGTON – Today, U.S. Senator Chris Murphy (D-Conn.), a member of the U.S. Senate Health, Education, Labor, and Pensions Committee, U.S. Senator Richard Blumenthal (D-Conn.), and U.S. Senator Ed Markey (D-Mass.) called on the U.S. Food and Drug Administration (FDA) to take swift action to require labeling of products that contain sesame or sesame seeds. Currently, sesame is not required to be labeled as an allergen on food products, yet sesame allergies are growing in prevalence. The senators heard directly about the dangers and challenges individuals with sesame allergies face from not having accurate information about what is in their food. The senators wrote a letter to FDA Acting Commissioner Stephen Ostroff requesting that the agency require that sesame – one of the most common allergens in the United States – be listed specifically by name on ingredient lists and that sesame be included in inspections for cross-contact.
“Given the severity and growing prevalence of sesame allergies, we respectfully ask the FDA to move expeditiously under its current authority to require sesame labeling and inspection of sesame cross-contact to help protect the health and safety of our constituents,” wrote the senators. “Without required uniform labeling of the presence of sesame, consumers with this serious allergy have no way of protecting themselves or their family members from its potentially life-threatening consequences. As Congress recognized when it passed FALCPA, accurate and comprehensive allergen labeling is essential.”
“Currently, the inclusion of sesame as a major allergen in processed food is not explicitly regulated by FALCPA, making it difficult for those with sesame allergy to determine which products may contain this allergen,”said James R. Baker, Jr., MD, CEO of Food Allergy Research & Education (FARE), an organization representing the 15 million Americans with food allergies. “With a significant documented increase in the prevalence of sesame allergy, which can be life-threatening, we are pleased to see Senator Murphy bring attention to the need and means for improving labeling to help families managing food allergies keep themselves and their loved ones safe.”
The Center for Science in the Public Interest Chief Regulatory Affairs Attorney Laura MacCleery said, “Several hundred thousand Americans are allergic to sesame, and their allergy is no less serious and no less life-threatening than that of those allergic to peanuts, shellfish, or other common allergens. The Food and Drug Administration could easily protect these consumers by including sesame among the so-called Big 8 food allergens for purposes of labeling and education. We’re grateful to Senator Murphy, Senator Blumenthal, Senator Markey, and others who similarly wish the FDA would follow the lead of Canada, the European Union, Australia, and other nations that require labeling of sesame and sesame-based ingredients.”
The full text of the letter is below:
The Honorable Stephen Ostroff
Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Dear Commissioner Ostroff:
We write to urge the Food and Drug Administration (FDA) to take swift action to require sesame seeds and sesame products to be labeled and regulated in a manner similar to the rules that apply to the eight current labeled major allergens.
Sesame is now one of the most prevalent, and most dangerous, food allergies in the United States. When Congress passed the Food Allergen Labeling and Consumer Protection Act (FALCPA) in 2004 to require the labeling and regulation of allergens then considered the “Big 8” (milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy), it was thought that these categories covered around 90% of all allergies in the United States. However, if FALCPA were enacted today, sesame would be included on this list. Allergists consider sesame to be an emerging allergy concern, affecting an estimated 300,000 to 500,000 people in the United States. Robert Wood, the director of the division of pediatric allergy and immunology at Johns Hopkins University School of Medicine, notes that sesame allergies “have probably increased more than any other type of food allergy over the past 10 to 20 years” and are “now clearly one of the six or seven most common food allergies in the U.S.” In addition to its mounting prevalence, sesame poses a particular danger due to the severity of the allergy: for some, sesame exposure can trigger potentially-fatal anaphylaxis.
A recent Citizen Petition—FDA-2014-P-2035, filed by the Center for Science in the Public Interest and a number of prominent allergists and concerned parents—outlines the need for action in this area. We support the petition’s request that the FDA require sesame to be listed specifically by name on ingredient lists of foods and be made part of inspections for cross-contact, to better protect our many constituents who suffer from such allergies.
FDA has the authority to regulate sesame in the same manner as other major allergens under FALCPA. Under 21 U.S.C. § 343(x), the Secretary may promulgate regulations requiring disclosure of allergens other than the allergens listed in the original statute, and has already done so in the case of the coloring carmine/cochineal. This provision also gives the FDA the authority to determine the manner and extent of such disclosure.
As Congress recognized when it passed FALCPA, accurate and comprehensive allergen labeling is essential to enable allergy sufferers to avoid specific ingredients and potentially fatal reactions. This need is especially critical for sesame, which is often listed under unfamiliar names, like “tahini” and “gingelly,” and is sometimes not identified at all as a component of “spices” or “natural flavors.” Without required uniform labeling of the presence of sesame, consumers with sesame allergies, and the families of children with this serious allergy, have no way of knowing whether sesame is present in the foods they are eating, and cannot protect themselves or their family members from its potentially life-threatening consequences.
FALCPA was enacted to improve allergen labeling so that consumers can identify the presence of an ingredient they must avoid. Given the severity and growing prevalence of sesame allergies, we respectfully ask the FDA to move expeditiously under its current authority to require sesame labeling and inspection of sesame cross-contact to help protect the health and safety of our constituents.
Christopher S. Murphy
United States Senator
United States Senator
Edward J. Markey
United States Senator
Update: 6/26 – here are links to coverage about the above:
Special thanks to Anna Luke, Manager of Online Community for FARE for going above and beyond to secure the following statement just after a busy period of time post-FARE conference in California at the end of Food Allergy Awareness Week. Thank you, Anna!
The title below is mine, but everything after that is unedited and complete as provided to me today via e-mail:
May 22, 2015 Statement from Food Allergy Research and Education Regarding Sesame Labeling
Sesame allergy can be severe — individuals who are allergic to sesame can experience potentially life-threatening reactions such as anaphylaxis. A 2010 survey showed that hundreds of thousands of Americans are affected by sesame allergy, and several reports have shown that sesame allergy has increased significantly in the worldwide population over the past two decades.
Currently, the inclusion of sesame as a stated ingredient in processed food is not explicitly regulated by the U.S. Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), making it difficult for those with sesame allergy to determine which products may contain this allergen.
Given the importance of education and awareness about this important health issue, FARE will be releasing new information and resources regarding sesame allergy in 2015, including a webinar dedicated to sesame allergy and a tip sheet on how to read a label to help consumers determine if a product contains sesame.
Improving education and awareness are critical first steps, but FARE is also engaged in advocacy efforts to determine how FALCPA can allow for the addition of new common allergens, including sesame and other seeds. FARE is committed to working directly with law makers, government bodies, and our food allergy community leaders to advance these efforts to help improve the quality of life and health of patients with sesame allergy.
In January 2013 I first became involved in the Center for Science in the Public Interest (“CSPI“)’s efforts to petition the FDA to require labeling of sesame in a manner similar to labeling requirements of the “top 8” allergens under FALCPA. By November 2014 when their petition was lodged, they had put together a solid argument and gathered support from allergists as well as families impacted by the lack of sesame labeling under current law. The Citizen Petition specifically requests that the Food and Drug Administration issue a rule that would:
1) require sesame-based ingredients to be listed by name (“sesame”) in the ingredient lists of all foods and;
2) add sesame to FDA’s list of allergens in Sec. 555.250 of its Compliance Policy Guides Manual, “Statement of Policy for Labeling and Preventing Cross-contact of Common Food Allergens” to address both labeling and cross contact issues related to food manufacturing practices.
In March of this year, Laura MacCleery, Chief Regulatory Affairs Attorney for CSPI reached out and inquired about my availability to attend a proposed meeting with the FDA near Washington, D.C. I didn’t know any particulars but I discussed the expense of the plane ticket with my husband, knew I could find a friend’s (comfy) couch on which to crash, and just needed the date to put everything in motion (and secure my mother in law to watch the kids). By the time I did buy the ticket to D.C., I was able to fly for an approximately $11 fee each way, plus the $99 annual fee for the credit card that afforded me the bonus points I needed to fly. That helped a great deal when it came to justifying a trip that put me in Washington for about only 28 hours.
Unlike other advocacy opportunities I’ve had in the food allergy arena when I wanted to make my voice heard regarding an issue, I wanted to make listening my priority (instead of speaking) on this trip. Coming from a standpoint of believing disclosure of allergens is not remotely partisan, I wanted to know why there might be resistance to the idea of labeling for the presence of sesame in food products. I’m not sure I have an answer at this point but I know where and with whom to start looking (I’m hoping to update on those efforts soon). I also now understand the long process we may be in for.
I landed in Washington at about 3:30 p.m. on Tuesday, May 12th, and navigated the Metro to CSPI’s office to meet my friend (and possessor of the above-referenced comfortable couch) Jessica Almy, who is the Senior Nutrition Policy Counsel at CSPI though we met a while before that role as a result of her website Vegbooks.org (where I’m a contributing reviewer). She introduced me to Laura and we went over the itinerary for the next day. We’d all have folders with information about everyone in our group as well as the individuals we’d be meeting. I’d brought a teal scarf for Laura as a gift – she knew it was Food Allergy Awareness Week so it was neat that the upcoming “Lobby Day” fell during that time.
I got to have a lovely dinner with Jessica, her family, my friend Jennifer from college and Chris from high school that evening on the rooftop of a pizza place in Adams Morgan. I should have been tired but there is something electrifying about the capitol even after a day of travel. There’s a line in Jane Austen’s “Persuasion” that comes to mind:
‘My idea of good company…is the company of clever, well-informed people, who have a great deal of conversation; that is what I call good company.’
‘You are mistaken,’ said he gently, ‘that is not good company, that is the best.’
And so, I had an evening with the best of company, not to mention yummy pizza!
The next morning I had made plans to meet my sister in law – we had never met in person before so I was thrilled to be able to coordinate breakfast on short notice. My brother introduced us over the phone right before he deployed last year (he won’t be back stateside until late 2015). She was incredibly sweet and our breakfast together breezed by at a place near the Senate office buildings where my first meeting had been set. She even gave me a ride to the Hart Building which was great because we got to visit a little longer that way.
Once inside the Hart Building, I navigated the marble halls to find the office of Senator Murphy of Connecticut. Laura was waiting along with Rachel Clark, the legal fellow for regulatory affairs at CSPI, and two other parents of a child with sesame among his allergies, Rob and Christine (Rob asked me to just use their first names in my post, I’m happy to oblige though it feels very informal). Brian Heller, who operates a change dot org petition started 9 months ago seeking sesame labeling and which was cited in CSPI’s Citizen Petition to the FDA, had e-mailed to indicate he’d skip the morning meetings (and lunch) but link up with us at the 3 p.m. FDA meeting later in the day.
Laura handed me a small red cloth bag, remarking “one good turn deserves another,” and inside was a turquoise ring she’d handmade. I know it may seem off topic to mention these details but each time I try to write this post without the personal aspects it just doesn’t match the way my brain processes experiences. I think understanding people as both professionals and as people has always been a crucial part of advocacy to me. I love that so many aspects of ourselves can co-exist in a given person. We can be mothers and crafters and lawyers all rolled into one. Her personal connection to food allergy is that her husband has an allergy to shellfish – I think if we include just one degree of separation with the 1 in 13 affected by food allergy, we’d have a very big portion of the population included, indeed.
At any rate, we met with Senator Murphy in his office and told him our stories. My story focused on label reading and touched upon when E was diagnosed, but Rob and Christine’s story of their son got to the heart of the issue. Encouraged by a pediatrician to expose their approximately 8 month old son to other flavors when he wasn’t interested in solid foods, they’d touched the tiniest bit of hummus (which contains tahini, derived from sesame) to his lips when he began vomiting, breaking out into hives, and swelling. He thankfully survived the experience but their lives were forever changed.
Senator Murphy was gracious and attentive, but also compassionate especially since his own family had been touched by food allergy in the past. (He did ask about the support of other food allergy groups which has spurred me since to contact AAFA’s Kids With Food Allergies and FARE to see where they stand regarding sesame labeling. Responses are still pending and I’ll update when I hear back with something official.) I managed to tweet after each meeting at the Hart building though the day became so much more fast paced afterwards that I didn’t get much documented online.
Next we were able to meet with staff at Massachusetts Senator Markey’s office – it felt strange to tell our stories again but each time we’d find more of a rhythm. Christine had to run an errand so Rob and I took turns sharing our history with sesame allergy and food allergies in general.
The response we got was inquisitive and receptive. I was really enjoying getting to see all the offices and take in the questions that people were offering. I had a printed picture of my kids with me at Laura’s suggestion – it was from a recent comic book convention we’d attended so they were in costume as Gandalf and Galadriel from Lord of the Rings. I so closely guard their identities online that it felt strange to be showing off their picture but I think they would have liked that they were there with me in that way. Plus, my mother in law is pretty great at making costumes!
Our final meeting “on the hill” (see, I’m using the lingo!) was with staff from (CT) Senator Blumenthal’s office. I had to snap a picture of the Lego display in the waiting area!
For this round of storytelling I took out the expired Auvi-Q set I carry in my purse (I always carry the most recently expired auto-injector set we have just in case it is of use) and offered information about needing not one, but two doses and how that related to emergency service response times. I wanted to convey the seriousness of exposure and how lack of disclosure puts us all at risk. Rob also was sure to share the fact that even restaurants trying to do the right thing for food allergic patrons would often have to correct themselves when they learned that bread items could contain sesame even if the familiar seeds were not seen on their exteriors.
The group that headed to the Metro to go to the FDA’s Center for Food Safety and Applied Nutrition included myself, Laura, Rachel, Rob, Christine, and Michael. Unfortunately we didn’t get to meet Brian in person as planned as we discovered he’d mapped his way to a different FDA office location 20 minutes away just as we were being called into the meeting room by April Kates and Carol D’Lima with the FDA. We were able to get Brian on his cell using the speaker phone system in the conference room so he could participate, however.
Laura talked about the Citizen Petition from November and stated our purpose in being present was to find out what the FDA thought of it and to learn if there was anything we could do to assist in processing it. We were informed that there were other petitions ahead in line and that responses were of late in excess of 40 pages (some even 70(!) pages) – the implication being a response takes time to get to and time to draft even when its time has come. We pressed on. I knew from the packet we’d been given that Carol D’Lima, FDA Compliance Officer, had a background that included work researching undeclared food allergens and their impacts. From the discussion it sounded like she had already began researching data from which to prepare the FDA’s response so it is encouraging that she understands the interplay between labeling and hidden allergens.
There were two points of confusion that I made note of during the over one hour meeting. One was the distinction between the change dot org petition administered by Brian and the Citizen Petition filed by CSPI. A few times the FDA representatives looked confused when a piece of information was referenced regarding the change dot org petition because that same request or information was not a component of the Citizen Petition before them for review.
The other issue was that it seemed as though the FDA wanted to find out if they needed certain forms of data to support adding sesame to labeling – the law doesn’t seem to mandate it but they referenced needing information for a preamble a few times. The resolution ended up being that they would verify what data may be needed, if any, before efforts are made to mobilize and provide the information. They seemed concerned about putting anyone through the trouble of marshaling resources before they’d verified what they may (or may not) need. So no call to action at this particular instant, though they kept circling back to the concept of showing the harm that not labeling for sesame would be causing.
Some other takeaways from my notes… Though many arguments for labeling sesame begin with pointing up north (Canada) and across the point (the UK) for the proposition that it would not be burdensome for many manufacturers to comply if the FDA mandated sesame labeling stateside, the suggestion was met with the remark that the FDA has to look at US data/needs. Which I understand, though I don’t think it negates the extent to which worldwide impacts are instructive, especially since one of the things implicated by increasing US sesame allergies is exposure to ethnic foods featuring the seed and its derivatives. There’s also immigration and international travel to consider to a much lesser extent.
Finally, I got the feeling that the pending response to the Citizen Petition wasn’t what it promised with the term “response.” What I mean is that I had envisioned that the FDA was preparing to dispute or agree with points in CSPI’s filing when instead they were trying to anticipate push-back depending on whatever position they take and address that commentary in advance. I get into that trap when I draft legal briefs, I anticipate the response to my words and try to head off those arguments while also making my own. It is a tough spot to be in but I can see how wanting to get something right would benefit an underlying cause even if it front loads a lot of the waiting time. And let’s hope we’re not talking about 10 years like labeling carmine, especially with “Dear Colleague” letters hopefully coming from the legislative branch voicing support for sesame labeling.
By the end of the meeting, as we were being walked to the exit to return our security badges/stickers, our hosts had warmed up considerably and thanked us for our time. My first thought as we walked out was that as encouraging as the Capitol Hill meetings had been, receiving resistance on the issue with the FDA made taking the effort to have the meeting all the more important. Better to know now what concerns there are and how to counteract them (even if their basis seems more related to industry than to being legally enabled to make the regulation).
People have asked me how the day went and I’d say it was fascinating and amazing. I feel like I made new friends and connected with existing ones. I made it to my plane on time for my trip home and arrived in the wee hours of the morning on Thursday so that I could be there for my daughter’s school musical debut as a member of the ensemble – keeping that promise to my baby girl was incredibly important to me.
I’m sorry it took so long to get something online about the whole day. I wrote notes and typed drafts of this post and would put them away. I’d return and tinker and tinker again. I sent emails to KFA and FARE, I messaged back and forth with other advocates. I had no idea what to expect from a “Lobby Day” and now feel like I’ve learned a great deal – hopefully some of it has been of interest!
Even with listening as the theme of my trip, I did find myself honing my story as May 13th progressed. For example, some don’t even realize that not all ingredients have to be listed for a given food. Sesame can hide under alternative names (tahini and the like) but the scarier situation is one where sesame hides as “natural flavor” or “spice.”
Also, there’s the idea that my daughter, at almost age 7, is reading labels for herself and I want, I need, for those labels to tell her the truth. I will not always be here for her and traveling across the country to talk about labeling is an outgrowth of the fact that I can’t actually keep her safe now or in the future.
I can’t guarantee that she won’t be exposed to her allergens, or that in my efforts to keep her safe I’m not opening her up to censure from her peers. In the same way that I didn’t know if I’d always be around to make meals for her (this blog was meant to chronicle recipes she could actually eat), I won’t be there to call companies or ask questions on her behalf. I need to teach her what I can but also see what I can do to change the world around her.
My mother often told us that the reason she worked to teach her fellow nurses was because she wouldn’t always be around and she wanted to help the next generation of nurses so they’d be effective caregivers for her children even as adults. I feel the same way about access to affordable epinephrine, stock epinephrine, labeling, and disability rights for those with food allergies. And to be honest, much like hand washing is beneficial for the health of all students, not just those with food allergies, disclosure on labels benefits so many. Even those who may react to foods for the first time and have no way to even begin to inquire whether something like sesame is the culprit because it simply isn’t on the label.
When someone leaves an allergist’s office with a food allergy diagnosis, they are given a prescription for (often costly) epinephrine but they’re also given a prescription that is harder to fill – allergen avoidance. In that sense it is fitting that regulation of both foods and drugs come under one organization’s control, because they are entwined. I’ve referenced this quote before, but it continues to be apt:
‘Let food be thy medicine and medicine thy food.’ – Hippocrates
Avoiding certain foods is a minute to minute prescription when you live with food allergies and knowing where sesame may lurk is a medicine whose time has come.
Caroline Moassessi and Kacey Larsen (among many others in Nevada) drop everything and spring into action multiple times a month when the legislature is in session. Last minute hearings? They’re there and rallying everyone else behind the scenes.
The best part is that I’ve had the chance to see them blossom into seasoned agents of legislative change just between last legislative session (2013) and this one. They get to the point but manage to bring personality and passion into the mix.
Thanks to my colleague Marc Randazza, I’ve learned it is easy peasy to get video from legislative hearings downloaded and made readily available. As Marc says, it is “[n]ice sunshine,” a reference to the sunshine act (in Nevada it is known as the open meeting law):
@woodrumlaw You look on the specific bill agenda on the legislative website, they’re all videotaped. Nice sunshine.
I’ve done just that with Monday’s AB158 hearing regarding epinephrine in camps, restaurants, and other public non-school areas (since schools have already gotten the stock epi treatment in Nevada). I wasn’t able to watch it stream live since I was at an appointment with my son but it was posted online in about two days.
Senator Hardy gets things started and is followed by Marsheilah Lyons from the Legislative Counsel Bureau, Michael Hackett, who is so kind to continue donating his time to this cause, then Caroline Moassessi of Grateful Foodie, her daughter, RN Kacey Larsen, and Dr. Stuart Stoloff. The clip is not that long and gives some great talking points as well as showing “how it’s done” when it comes to legislative testimony. Keep it brief, clear, and informative but also give it a little heart.
Did you catch Dr. Stoloff’s point about reactions to medications? And the percentage of reactions that occur outside of the home? Very useful tidbits if you’re putting epinephrine access in a broader scope. People often pre-submit written testimony so their spoken testimony supplements the written remarks a lot of the time. I’ve linked to some of the testimony that was submitted for this particular hearing (and this is the news article Caroline shows briefly in her testimony):
Thank you to everyone working on this, including those who’ve submitted comments on the legislative website and who have written notes of thanks to their representatives in the Senate and Assembly. This enabling legislation will make such a difference. Go Nevada!